3 minute read
England Rare Disease Action Plan, 2023 Iteration
The UK government and devolved administrations published the UK Rare Diseases Framework in January 2021, setting out a shared vision for addressing health inequalities and improving the lives of people living with rare diseases across the UK.
The framework outlined 4 key national priorities:
⦁ Increasing awareness among healthcare professionals.
⦁ Better co-ordination of care.
⦁ Improving access to specialist care, treatment and drugs.
To turn this vision into action, each of the 4 UK nations has committed to developing nation-specific action plans detailing how these priorities will be addressed.
On the 28th of February 2023 (Rare Disease Day), the Department of Health and Social Care (DHSC) released the 2023 iteration of the England Rare Disease Action Plan (ERDAP) which both reports against progress towards meeting the 16 actions laid out in the ERDAP for 2022, whilst introducing 13 new actions in response to stakeholder consultation throughout 2022.
Progress towards meeting the actions of 2022:
The DHSC have made progress towards meeting the actions set out in the 2022 ERDAP and these achievements are shown in the infographic below:
Infographic showing progress towards meeting actions set out in the 2022 ERDAP. These are: improvements to newborn screening processes, >1000 new, complex diagnosis via Genomics England Clinical Research Interface, virtual consultations toolkit developed to improve access to specialists for people living with rare disease, innovative medicines fund launched to fast track cutting-edge medicines to NHS patients, and new educational resources for healthcare professionals.
Despite this progress, there is still work to be done across the actions laid out in 2022, therefore, DHSC have marked some milestones as not yet completed and have extended their deadlines, with other actions also extended after review by the DHSC once completed, with the department deciding more work can be done in these areas.
The new actions:
The 13 new actions introduced as part of the 2023 ERDAP aim to ensure that people living with a rare disease have access to treatment, care and support and aim to also ensure that health inequalities are reduced for people living with rare diseases, ensuring access to clinical research and access to services.
What are MSUK doing to ensure people living with IMDs are included in the rare disease action plan conversation?
We’re actively engaging with the DHSC to ensure your voice is heard and are part of the ERDAP Patient Advisory Group (PAG) which directly influences how this action plan looks. Not only do your experiences matter, they're vital in conversations like this.
As part of this, we’ve took a leading role in pushing for a focus on not only the medical aspects of rare disease but also the social elements such as ensuring you’ve got access to mental health support, improving access to benefits and adequate resources to maintain the highly specialised diet required for the symptom control of many inherited Metabolic Disorders (IMDs).
With this in mind, we’ve taken data from our “Cost of Living with an IMD” report and shared this directly to Dr Kath Bainbridge (Head of Genomics Science and Emerging Technologies at the DHSC), who’s stated they’d like to hear more as the DHSC looks to commission research into other aspects of rare disease through the National Institute of Health Research.
